Well, this is, sadly, my final piece for Greater Manchester PSTRC, on my own personal experiences with Multimorbidity. I have enjoyed the experience of not only having a platform to vent my own frustration, but to hopefully interest, inform, and help others in a similar situation.

Ironically, the update that I do have since my last post is a perfect example of why I wrote these articles in the first place – it is the ultimate case of a patient not being listened to.

I have been in receipt of Disability Living Allowance (DLA) since my Pituitary surgery in 2005. Well, this year my DLA was changed to PIP (Personal Independence Payment). I didn’t expect much of a problem, as all the evidence and back up from medical professionals was there to be seen. However, it did take a week of putting a couple of hours in a day, with the help of my wife, to get the PIP form done. Naturally, that proved very stressful and tiring for someone like myself who has severe chronic fatigue. The form asked if I would give my permission for them to contact any medical professionals who had treated me, and I agreed to this.

Much to our surprise, I was sent for a PIP assessment, which basically consists of having somebody who has never met you before fire questions at you for an hour, and ask if you can raise your hands above your head, bend your knees, and touch the inside of your leg with the opposite foot. Then it is “Goodbye, you should hear from us in six to eight weeks”. Well, I did. I had failed. Apart from the emotional upset and anger it caused, that meant a large loss of income to me and my wife after receiving DLA unquestioned because all the proof was there for 12 years. The only change during that time is that my conditions have become steadily worse.

Why did this happen? Because they completely ignored the facts. Not opinions, facts. They made sure that I was “two points short” in their scoring system. My wife is my carer, but they said I didn’t need a carer. I have memory problems, they said I don’t have memory problems. I have cognitive dysfunction, they said I did not have cognitive dysfunction. My wife has to administer my medication as I get muddled and make mistakes, they said I sort my own medication out. I have aids in the bathroom, including a frame, a raised toilet seat, and a squatting stool, for severe problems that have been medically recorded. They said I did not need these aids. Not only all of this… but they did not contact any of my doctors or specialists, seemingly because they knew that they would back me up. We applied for a reconsideration; they once again ignored the facts and turned me down.

We have put in an appeal and sought the back-up of our local MP, and he was only too happy to help as he could see the decision was nonsense. We are now in the process of waiting for the date for this appeal, something made even more painful as we are also going to have to attend a coroner’s inquest into the passing of my dear Mother last December, and this is expected to take place between October and December.

In summing up, I can only say how sad I am that, during the process of my series of articles, nothing in the way of Multimorbidity services has happened, no progress has been made for the many sufferers of this life-changing affliction, and I cannot see anything changing in the near future. Marching down Whitehall to Downing Street, chanting and waving placards is not for us… most of us haven’t got the energy! But, eventually, somebody of influence needs to make a noise about this, and the only way for that to happen is to somehow voice our unhappiness and frustration as much as we can and to whom we can, until the term “Multimorbidity” is no longer met with bewildered looks from the vast majority of the population who have never heard of it.

In conclusion, I’d like to wish Greater Manchester PSTRC all the best in its future research and endeavours. To all who have read my articles and have a daily struggle with their health, thank you and I hope you find something that makes life that bit easier and more enjoyable. Perhaps that may even be in the form of a medical practitioner who… listens.

In part one of this blog looking at the complications of taking regular multiple medications, I described some of the problems faced by the patient, in this case, myself! But, of course, it makes it very difficult for doctors and specialists to treat me for a specific condition when there are so many other things to be taken into account; trying to make sure that, in treating one condition, it does not aggravate another, and that any medications given to me do not interact in a negative, or at worst dangerous, way with anything else I am taking.

I make a point, before I see a specialist, either whom I have not seen before or who may need reminding, to type up a comprehensive list of all the medications I take, both regularly and intermittently, to hopefully make their task that little bit easier in knowing what they can and can’t prescribe me, mainly in terms of what drug might interact with another in any way, and the vast majority are very grateful for this (NOT ALL!), and tell me so. I like to help them to help me whenever I can, and I make this clear; I feel that is showing equal commitment.

There are a few who virtually ignore my notes, not taking into account the effort and care I put into preparing in this way. There are certain doctors that I see, who purely try to do their best for me, while realising my situation makes me a “complex” patient, and therefore they try their hardest to “tailor” my treatment so it does not compromise anything else, and I fully appreciate the difficult job they have in doing this; there are others who seem untroubled by the situation and just “get on with it” as it were, hopefully knowing that how they will treat me will have no bearing on anything else.

Then – very recently – I had the perfect example of the flip side of things, when not only does the practitioner, who I had only met on two previous occasions, not appreciate my list, but positively rolls it up and batters me around the head with it! (Not literally, but they may as well have…). My wife and I explained that my overall level of health and fatigue had, if anything, taken rather a knock since I last saw him. His reaction was to take one look at my long list of medications and say “Well, if I was on these, I wouldn’t even be able to do my job”, insinuating that my condition was caused BECAUSE I take so many tablets. A rude and belittling verbal attack from somebody who immediately dismissed my whole medical history in one uninformed and disinterested put-down. Any medical practitioner doing their job properly by taking a genuine interest in their patient, would NEVER make such a flippant remark – each of my medications has been given to me for a reason; reasons which this person neither had the time or inclination to go into and yes – the list IS long – and so is the list of conditions they are given to me for – that is what MULTIMORBIDITY is!

But, all the while, there is no kind of ANY facility, service or specialist for, or indeed seemingly with much knowledge of, multimorbidity in my area, and more than likely many other areas of the UK; this does nobody – neither doctor or patient – any favours at all.

by Jonathan Stokes, Research Associate in the Centre for Health Economics at The University of Manchester

In December, I completed the final exam (or ‘viva’) for my PhD, which was funded by the NIHR Greater Manchester PSTRC. In the discussion section of my thesis, I presented an argument that my examiners suggested I should explore further, so I’m using this blog post to try and record some initial thoughts, which I hope to turn into an academic paper at some point (so feel free to post any feedback you have below).

So, my argument, briefly, was this:

Health systems are recognised to have a so-called ‘triple aim’, aiming to improve health and satisfaction of patients, while reducing costs. With the move towards ‘integrated care’, policymakers argue that integration can improve all triple-aim outcomes simultaneously.

In the NHS, integrated care is defined around the patient’s feeling of joined-up care (i.e. around the outcome of satisfaction). However, policymakers, when setting out the aims of their integrated care models aim primarily to reduce costs, usually by reducing emergency hospital admissions (probably unsurprising given the ‘NHS crisis’ currently being covered in the media).

Therefore, there is a potential conflict between the patient-level (the feeling of more joined up care for the patient) and system-level (reducing costs) goals of integrated care in the NHS, and potentially a need to prioritise aims.

Basically, there is little evidence that the ideal scenario of not having to pay for improvements in care quality is plausible (note: that doesn’t mean we can’t have this improvement, it just implies that we would need to invest more in our health system to get it). And, if we design interventions that address the NHS definition of integration and increase satisfaction with care, then we won’t necessarily meet the pressing system aims of reducing costs in the current NHS funding crisis.

So, to my mind, if we want to contain costs, this would mean that the patient satisfaction aim (while still important, and should continue to be measured) should be bumped down the priority. This is partly because people who are healthier tend to be more satisfied in any case (so it is partially a secondary outcome of better health and should take care of itself if people get better health outcomes), but also because in a tax-funded system like the NHS, where the overarching values are delivering equity and social justice, sustainability of the system is more important than preferences of the individual (i.e. ‘consumer-focused’ healthcare). Especially when aiming primarily for satisfaction of the individual harms the system.

To try and explain why this might be, imagine that if we’re primarily aiming to improve satisfaction with care, implementing an intervention where we gave everyone a dram of whisky as they waited for their appointment might send satisfaction rates through the roof, but it would cost a fortune and might not do people’s health a lot of good.

Healthcare is a complicated process (which is why it takes so long to train healthcare professionals, who in fact never stop receiving training during their working lives). One of the ‘market failures’ in healthcare (i.e. why a normal economic free-market system, where the consumer decides, doesn’t work) is ‘information asymmetry’ (i.e. the expert knows more than others, so can make the more informed decisions). While this asymmetry is clearly in patients’ favour in some aspects (e.g. experience of disease/ experience of using health services/ treatment burden etc.), it favours the physician/expert in others (e.g. treatment course in many cases/ health system setup or organisation/ cost of care etc.). The patient is therefore not likely to make the most informed decision when it comes to overall health system costs.

In view of this, I think there’s an interesting debate to be had about the role of ‘patient-centred’ care more widely, and how this fits with our system goals. For example, I went to a seminar the other day where an NHS Vanguard programme talked about how they were shifting their approach in patient care to one where they ask the patients to define their goals, asking them ‘What matters to you?’. But, before that, we’d had a talk from NHS England about the national metrics that the Vanguards would be assessed on, centred on system goals (again, primarily about reducing avoidable emergency hospital admissions). This got me thinking: what if the patient’s goal is something that doesn’t affect our system goals whatsoever, or is even completely contrary to these? If it was in the USA, the patients themselves (or their health insurer) would pay for the option and it wouldn’t matter so much, but in a tax-funded system there is more need to think resourcefully at this wider system level (and try being poor and getting decent healthcare in the USA if you think that’s the way to go instead).

The role of the patient in influencing/defining research priorities could be another debate. For example, the PSTRC and wider NIHR funders are very focused on Public and Patient Involvement (PPI) in research. But, what if the researcher (while employing common sense, and not purely as a stereotypical ivory-tower-type) has access to more knowledge about where the current knowledge gaps are, and which questions are possible to answer and how? Is it a good use of resources to pay for the ‘lay perspective’ in all cases (or at all)? (But, of course, this is just one simplified question in the debate of the role of PPI in influencing and defining research priorities, the balance of which I hope to explore further in a future post).

In sum, I think some of the assumptions we make (in good faith, I’m sure), about the aims and delivery of health services, and research to support these services, are still open to debate. While we dwell on ideally achieving all outcomes, we neglect the reality of the need for trade-offs and priority setting. But, I’d be interested in hearing your thoughts.

In my last blog, called “Keep taking the tablets: part one”, I tried to explain some of the difficulties I have faced in having to take multiple medications. Part Two will be based on the difficulties faced by medical professionals when having to treat such a complex patient as myself, without any training in multimorbidity it seems.

But for now, here is a perfect example, and my latest experience, of the main theme of all my blogs: Getting others to listen to, and trust what you say as the patient.

A few months ago, I was in hospital for an operation on my leg. It was a hospital that I had not been to before, that specialised in the treatment I was due to have. The staff were excellent. One doctor, seeing the comprehensive notes I had typed up, as usual before I have a hospital admission, said they ‘were excellent’ and ‘so helpful’. It really lifted my morale because I had been laid up in there for over a week. But, as we know from my previous posts, it only takes one. That person arrived in the form of a physiotherapist. Here is an excerpt of the complaint letter I wrote to the hospital:

“It was the afternoon, sometime beyond 2pm I think, and I had just drifted off to sleep…when one of the physios arrived at my bedside. She wanted me to get up and do the “stair test”. I explained that I had just gone off to sleep. “Oh I’ll come back in a while, when you’ve had your downtime”, I believe she said. I explained to her that it was not like that; [because of my other conditions] I was likely to be asleep for around two hours, and that when I woke up, my mind would be very disorientated for quite a while. She did not accept this, clearly had no interest in my overall health, was argumentative, dismissive, insulting, and sarcastic.

The physio was clearly put out: “Well what do you do in the afternoon at home if you want to go to the toilet?” (Immediately, I knew she was trying to catch me out; neither pleasant or professional) I told her “I am in such a deep sleep in the afternoon that wouldn’t happen”. As I realised that I was, in fact, being challenged, I thought back to the support of the Doctor I mentioned earlier. I said that the Doctor had spoken to me, had read my details, and had made clear that I would be given time to get well enough to go home. I told her that he had said it would be possibly Monday but probably Tuesday that I would be going home, she did a dismissive laugh and said “Oh no, it doesn’t work like that…we hardly ever listen to the doctors anyway”. I was really shocked by that last comment. “Who was this Doctor, anyway?”, she continued, looking at me with more and more disdain as I lay there feeling awful in my hospital bed because my brain was desperately telling me I needed to sleep. I told her I couldn’t remember his name. Around this stage she went away to talk to somebody (no idea who, but there was certainly no apology when she got back). Having returned, she said that the porter would come for me around five o’clock to take me and a physio to do the stair test. This was then my turn to make clear that it didn’t work like that. I told her that I would try my best, but I may still be too woozy to do the test. “Well he will just have to go away again, won’t he?”, she snapped. I actually remarked to her at this stage that she was getting cross with me. She somehow, of course, denied it. I pointed to the notes I had typed that had been such a help to many during my stay, she briefly picked them up, had a quick look…but did not read them. I have been underlining the word “read”, because it makes such a difference if my notes are actually read properly; I have worked hard on them, so as to explain all. What really did it for me, though, was one of the next comments. “Some physios would be even stricter than me” she said, or words to that effect. I’d naturally had enough by then, feeling appalling, having a nurse with me trying to check my health, and having my integrity brought into question. I verbally let out my despair to her, saying the following: “What good would it be for a strict physio, or anybody, to demand that I try to walk up and down a set of stairs while part of my brain is wishing to close down?”. I would think that at least half the ward heard me, and she left soon after. I am not a person who goes around picking faults where my care is concerned, but I knew that the way I was treated and spoken to on that day in your ward, so soon after surgery, feeling so unwell – I was also being treated for low oxygen levels at that stage – should in no way go unreported.”

The “incident” is now being investigated. The fact that the physiotherapist had no interest in reading my medical notes speaks for itself…a multimorbidity patient has to be treated as a whole, otherwise there could be danger to the patient. I believe this MUST be enforced, as soon as possible.

The title of the re-introduction to my blog posts in a Greater Manchester PSTRC newsletter was “Trust Me, I’m a Patient!”. It seems this is still not happening, at least in a great many cases, and of course this can be pivotal to the overall health of those patients by their wishes going unheeded. My experience is a perfect example. As a result, I felt very unwell because my sleep had been interrupted, I was upset and angry at being treated like a hypochondriac, and, of particular relevance to these blogs, it felt soul destroying – not only do we have no specialist multimorbidity care, but even when one takes the trouble to write information to guide the medical professionals, some, like the example above, cannot be bothered to read it.

I have since been treated for a relapse of my clinical depression. Who knows what part in that was played by the physiotherapists attitude…and, what’s more, how many other patients with similar problems experience the same kind of thing, but, unlike me, do not get the chance to talk about, and share, their experiences, forcing them to perhaps either bottle it up, or give up even mentioning their invisible conditions, all this to the detriment of their health…just because there are medical professionals out there who will not believe, trust…

The height of the controversy came in February 2014, when the programme was put on hold following NHS England’s highly criticised attempt to inform the public about care.data through a national leaflet drop. Issues with this mail out and the lack of clarity about the project became the subject of many news stories, and a popular topic on social media.

My colleague Gavin Daker-White and I were following the debate on Twitter, where a wide range of views and opinions were being expressed. Tweets highlighted the potential benefits of care.data, revealed worries, provided links to more information, and instructions to opt-out. To better understand the strengths and criticisms of the programme, we undertook a qualitative analysis of tweets containing the hashtag #caredata.

Those for and against the programme shared a range of concerns, including the issues reviewed by Dame Fiona Caldicott. Tweets also identified communication failures, confusion about care.data, and a lack of patient-centeredness. We found these concerns were eroding trust in the healthcare system, which, if ignored, could put patient safety at risk.

Many people will be relieved that the care.data programme has been closed but this is not the end of the story for data sharing in the NHS, and lessons need to be learned. Our work also identified the potential benefits of such projects, for patients and other stakeholders, and recommendations for their design and implementation.

For future programmes to be successful, they must actively engage and involve patients in discussions and decisions about who can access their data and how it can be used. People must also be fully informed about both the risks and benefits of data sharing. Thus, we strongly support Dame Fiona Caldicott’s view that “A key aspect of this work must be a dialogue with the public.”

Blog posts reflect the personal opinion of the author and are not endorsed by the NIHR, the NHS, the Department of Health and Social Care, The University of Manchester, The University of Nottingham or the Greater Manchester Patient Safety Translational Research Centre.